Newly diagnosed

Hi, 

Sorry to hear about your partner.  Not that ive officially been diagnosed yet but he's story so far seems very similar to mine, except my diagnosis took far longer (8 or so months).

Basically I had a dull ache in the testicle, no obvious lump (even the GP couldn't feel anything) , it was only the ultrasound that picked up a problem, a couple of 'shadows' on the testicle.

Fast forward to today, I had a ct scan pre op and that was all clear, as we're my bloods which indicated no spread - although Im not taking that for granted until I've been officially diagnosed. I'm now a testicle lighter and have an appointment on Friday to find out what was going on down below and what my course of treatment will be, if any. 

I also had a little cry early days (putting it mildly) , but have since embraced the worst case scenario so I'm ready for whatever comes my way. I would say the waiting has been the worse part, I just want to get on with my life,  either with a 3 month dose of chemo or regular hospital checkups, either way I just want to know what the rest of 2019 holds for me. 

The thing thats helped most me is telling close friends and family really early, I've been amazed how supportive everyone has been. Plus it's meant that this blip hasn't become mine and my wife's 'little secret', it's removed the stigma of talking balls so to speak.

I'm not sure if that helps at all, and obviously every case is different but as I'm sure others will say - if your going to get cancer, testicular is the one to get (not that he will feel that way at the moment). 

Hi,

Thank you for replying, makes me feel slightly better about the whole situation.

I am glad your results came back clear, what a relief that must be! 

He has been very open to family and friends about everything, as he says if it’s going to come for someone he would rather it be him.

I’m so proud of how he’s dealing with it all although I don’t think he feels the same way. 

He has the CT scan on Wednesday and we really are hoping for the best, as it has been dealt with in the space of a few weeks.

we have heard numerous times ‘if your going get any type of cancer this is the one you want’. I honestly feel it is the waiting that is getting to him most and the ‘unknown’ at this point.

Thanks again for sharing your experience! 

Hi flip101,

Sorry you find yourself here, but welcome.

From what you have described, can’t feel a lump, it sounds like it has been caught early, a real good chance it’s a stage 1 diagnosis, that is it hasn’t spread.

If that is the case, the worst you are going to have to deal with is a lot of waiting for results, and worry at surveillance meetings.  But then that is the hardest bit of cancer, dealing with the mental and emotional anguish, your own and of your loved ones.  

Rest assured though, 95% of men diagnosed with cancer are here 5 years later.  If it’s pure seminoma stage 1, then your husbands chances of being here in 5 years time have just increased to 101%.

If you have critical illness cover, it WILL pay out.

Be prepared for bit of an emotional rollercoaster, but trust the stats.  

Any questions just ask, there is a wealth of experience and knowledge on this site.

Take care 

dan

Hi Dan,

we got an update this morning to say his bloods are clear which is great and from my endless hours of googling may indicate no spread? However only the CT scan will confirm this.

Thank you for mentioning critical illness, the thought never even crossed my mind and good news we do have it! Will await the biopsy results and go from there.

My partner had asked how he will feel in the days after the surgery, don’t suppose you could offer any advice on this? 

Thanks again for your support! This site has been great!

Hi Flip,

The CT scan will give the conclusive view of spread. Bloods offer a guide, eg my bloods were normal but i had spread, but its better to have normal bloods, obvs!

Post Op - views vary.  I've had a few surgeries in my life, knee reconstruction being the worst, taking a year to get back to full fitness, compared to that the ball being removed was a walk in the park.  Obviously the effects of the anesthetic immediately after, then a 6 inch scar that needs to heal, and the whole area to settle down.  2 weeks post op i went to a relatively busy pub for a drink, a little gingerly mind, but it was fine.  3 weeks after and i was virtually normal.

You may have seen in another thread that OutoftheBlue is experiencing fatigue following the op, which may or may not be, can often be linked to lowered testosterone levels.  He suggests that all men should have a baseline testosterone level blood test before the op so levels can be brought back to prior levels after.  The view is that the other testicle should take up the slack and maintain levels, but it might not. You may want to ask about a testosterone level test pre op?

Other than that start planning that holiday to celebrate the great news you are statistically likely to receive and spend some of that critical illness money!

take care

Dan

Hi Flip, 

Sorry you guys ind yourself here but your in the right point place for good information.

i went to the doc regarding what i wasn't sure was a lump in my testicle in January, doc thought it was a cyst  and sent me away, cpl months later it was still there, no pain no symptoms, looking back maybe a little swelling, so went back again, this time referred for an ultrasound which i had the next day,

everything happened very quick

i was immediately diagnosed with likely testicular cancer, that was  on May 9 this year, 7 days later i had a orichdotomy (or nutectomy as i call it now) as a day case and sent home, that was the Friday, i was pretty sore and banged up over the weekend, but went back to work ( desk job) on the following Tuesday (self employed), i was a bit fragile but not in danger of hurting myself 

everyone heals at a different rate, and has a different tolerance for discomfort, but i was back at work 4 days later and 10 days post op i rode to the TT on my motorcycle and camped for 10 days on an air bed in a field.

was that wise?, probably not, ive had better holidays but i wasn't letting something as 5hitty as cancer interfere with my life for any longer than it had to.

i had my oncology apts and scans 2 weeks later and the week after that i was luckily given the all clear and given 5 year monitoring.

the wait between the Op and the CT results was pretty tense, but i didn't get upset, or too stressed ( i thought) i was very pragmatic, hat will be will be etc. turns out i had a 40mm tumour which was a pure seminoma tumour , it was only when the Oncologist told me following the op my scans were clear that i got upset, as in very emotional and couldn't speak or catch my breath properly for 20 mins, i hadn't realised how worried i was about the results.

if your husband cries sometimes, let him, no biggie, its a release, better out than in and all that, he never expected to be in this position ( or you) , there is no right or wrong way to act or emotions to display / control, 

my brother had a massive cancerous brain tumour 8 years ago, which has changed his life, me i got off light , i got the most treatable cancer a man can get, in comparison, i got a cold while he got typhoid.  im very lucky, i know that, theres every chance your husband will be too, hell, not even luck the %ages speak for themselves

im 3 mth post op now, and other than a scar and a hald empty nutsack, it seems like a dream , not a pleasant dream , but very surreal, the speed with which things moved once identified, wow.

i wish you both well on your journey, in all likelihood by the time you have your baby, this will be like waking from a dream , and a past memory. llok to the future, All things pass.

good luck

Hi about 4 weeks ago I found out through a colonoscopy that they had found a growth that looks cancerous, I turned 40 in April. 

Whilst not the same type, all i can say is that the following two weeks waiting for prognosis were two of the worst weeks of my life! I was the same - crying and so up and down. It was a complete headf*ck. 

all anyone said to me was ‘be positive’ - which I’d probably have said too but it’s so hard. 

One tip from me - try to clear your mind of what they are going to say. I was prepared for it to be C (it was) but of 5 people I’d spoken to all 5 had surgery to remove it and no chemo / radio. So that’s what I was expecting if it hadn’t spread. 

Mine was caught early however it’s low down so to try to avoid surgery (and a colostomy bag) I’ve just started radiochemotherapy. There are so many outcomes and as someone said to me your C story is like a fingerprint it’s unique to you so don’t try to second guess (or Google) too much.

Btw my blood tests all came back clear before the colonoscopy so I think that’s a positive that it’s been caught early. 

Good luck for the scan today :)

Hi guys! Sorry I’ve not been on here much just thought it was right to give you all an update! 

So ct scan went ahead 3 weeks ago yesterday as well as the op the same day, overnight stay in hospital and back home the next day.

He was in a lot of pain but 3 weeks on he’s out and about and enjoying spending time with our 3 year old.

CT scan came back with something in his liver and lung but they didn’t seem too concerned and wanted to wait until the biopsy came back.

we found out last Thursday that the cancer type was the one I’d wished for (how weird is that, wishing for cancer) but it’s SEMINOMA! The best news we could have hoped for. 

We have an appointment at Edinburgh Cancer Centre on Monday but as far we know they want to do 5 year surveillance and no chemo! A further scan on his liver to rule anything else out but all in all a positive outcome so far! 

All I can say is I am extremely proud of how he has handled everything. We can now hope to look forward to our new arrival at Christmas.

Mad to think at just 29 he’s been through the mill but we are just thankful of this outcome as it could have been a lot worse.

Thanks for everyone’s advice and support! 

Hi flip,

Great news, where have you planned to go on holiday?!

take care 

dan

Thanks Dan! 

Oh well that’s is the question haha! We’re going to wait until next summer as the new arrival will be a few months old by then, then we are going to have the biggest, best holiday of our lives! 

If this experience has taught us anything it’s that life is most certainly for living and that exactly what we plan to do